Autumn/Winter Issue 2012 Asian MS – Newsletter

IMPOSSIBLE IS NOTHING! The legal world always seemed so glamorous to me. I was fortunate to have exceptional support from Every week I’d sit and watch Ally McBeal and think “that my family and friends. In order to keep busy and could be me.” I even went to the business card machine divert my mind elsewhere, I began to take up in the local supermarket and had my own cards printed various courses including complementary up at the age of 15. So when I left school, it was clear to therapies. This was in the hope that I would be me what I wanted to do. After finishing my A’ Levels, I able to understand myself, my mind and my went to study Law at university. And three years later I body; to try and understand why this was graduated, ready to take on the legal world! happening to me. The courses did not give me the answers to my questions but they did teach In my early 20’s, I me many things, including having a positive was diagnosed mind and an ambitious outlook. I was moving on with MS. I was and getting on with my life. My legal dreams devastated and behind….. Is this what I wanted? dreaded the worst. The illness A few years later, a conversation with my father was new to my changed everything. He reminded me how environment. I did much I wanted to study law and how hard I’d not know anyone worked during my degree. He was right – but I who had MS and was only one third of the way to becoming a there was a solicitor. I had a lot of catching up to do and general lack of over the years doubts had built up in my mind understanding as as to whether I could still do it. to what MS was. Due to my There was only one way to find out. I applied for diagnosis, I could the post graduate course and to my surprise, I not go on to do my Post Graduate which was mandatory was accepted. A few weeks later, I was back at for me to become a solicitor. As I was initially very weak, university, studying the subject I loved. Going I could not over exert myself and found comfort in back to studying was difficult – not just adjusting keeping my mind occupied. In a way, I started feeling back to lectures, coursework and exams, but sorry for myself. also having the loss of income, social life and, most, importantly coping with the MS.

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Looking back, it was not as hard as I thought. I had support from organisations that I did not even know Do YOU have a offered help. This gave me even more encouragement. Throughout this time, all I could personal story to think was that I had to do this, not only for me but for my family. Today, I’m working as a solicitor in a busy tell? law firm. I draft legal documents, negotiate deals and represent clients in court – just like the lawyers in If you would like others Ally McBeal! to hear about your personal journey My message is simple, “if you put your mind to it, nothing is impossible.” Having MS, or in fact, any with MS then other illness does not mean that your life has to stop. please do get in There may be obstacles and restrictions on your touch with us here at Asian MS. Email journey but the key is to stay positive. [email protected]

Ms Dee Popat - LLB (Hons)

FUNDRAISING FOR ASIAN MS Dee has been a member of Asian MS for

around two years. She has also been If you are interested in

involved in other MS charity work and fundraising for Asian MS, please organised the “L-Factor” talent show which contact our fundraising officer, Mukesh raised £5,000. She’s always looking to do Jethwa on [email protected] more MS-related work when the opportunity arises. We rely on donations to keep going so if you know of someone wanting to raise She is also involved in other voluntary money for charity, why not suggest that work – she is/has been the Secretary of they fundraise for Asian MS? There are

the Young Lohana Association of North further details in this newsletter about London, Cultural Secretary for the Hindu how to make a donation and what the Council in Brent, Chair of the Independent money is needed for. Custody Visiting Panel (Harrow), a

volunteer with Ashiana (which helps

children with learning difficulties), and a member of the Independent Advisory Group for Harrow Police. She also enjoys Deadline for the next edition of socialising, eating out and watching the newsletter is 28th February movies.

2013. Please send your stories, links, photos and news to

[email protected]

Page 2 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070

A message from the Editor……

Summer has come and gone very quickly Navratri and Diwali having come and gone, and what a summer it was. The Olympic and Christmas fast approaching, please do and Paralympic Games brought the remember Asian MS when you’re thinking nation together and put the spotlight on about making charitable donations during the amazing achievements of athletes these celebratory events. from across the globe. I was lucky enough to see live action from both events but I was particularly amazed at Lastly, we rely on volunteers and there is the athletic ability of the wheelchair rugby players. What always more work than there are hands to a completely crazy and brutal sport! What many get it done! If you’d like to get involved Paralympic first-timers seemed to come away with was a please let us know. Specifically, we’re Membership sense of anything is possible and achievable if you put currently looking for a Secretary Website Editor your mind to it. and a .

This is what we try to encourage here at Asian MS, and Enjoy this edition and please pass it on to we would love to hear about your personal stories about anyone who you think may be how you have coped with your MS diagnosis. This is why interested in our work. the front page for this edition has been given to one of -Trishna x our members, Dee Popat, who continued to pursue her dreams of going into the legal field post-diagnosis. PS. Please don’t forget to book your flu jab, if you have MS! More details on p.13. We are hoping to run a few fundraising events soon, so please do keep us informed of any ideas. With Eid, CONTENTS

-Impossible Is Nothing: A Personal -Paralympics Opening Ceremony; Launch of Story….p.1-2 WAMS….p.14

-A message from the Editor….p.3 -Funding Support Opportunity; Getting Your Flu Jab….p.15 -General News….p.4-5 -Recipe From Lubna; MS In The -First Serve!: Tennis Tournament Media….p.16 Fundraiser…..p.6 -General Information….p.17 -A Chance To Get Involved….p.7-9 -Latest Research & MS In The News….p.18 -Relapse Support Scheme….p.10 -Fundraising For Asian MS….p.19 -Care & Support Update….p.11 -Useful Information….p.20 -MS Society Awards….p.12

-Dates For Your Diary….p.13

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GENERAL NEWS

International collaboration to speed up Amy Winehouse Foundation research into progressive MS funds short breaks for young The MS Society has joined an international collaborative effort people with MS to speed up the development of treatments for people The Amy Winehouse with progressive forms of MS. Foundation has recently given The International Progressive MS Collaborative was launched the MS Society a £10,000 on World MS Day in May by charities from the UK, USA, donation, of which £5,000 is to Canada, Italy and the Netherlands, along with the MS be spent on grants for short International Federation. breaks, respite care and

holidays for people with MS Researchers and medical experts from across the globe will come together later this year to discuss priorities and identify aged 25 and under. If you know the research that is needed to get us closer to finding anyone who may benefit from treatments specifically for progressive MS. this opportunity please ask them to contact the Grants Dr Doug Brown, the MS Society’s Head of Biomedical Team on 020 8348 0700 or Research and a member of the Collaborative said: “There are [email protected] currently no treatments for people with progressive MS to slow the worsening of disability, and trials and studies to identify potential treatments have so far been disappointing. For those with MS over 25, grants for short breaks, respite That’s why we’re delighted to be part of the International care and holidays are available Progressive MS Collaborative – a proactive attempt by MS through the MS Society’s Short charities around the world to find an urgent answer to this Breaks and Activities Fund. problem.” More information about the fund It is hoped that by working together, MS charities can identify can be obtained from the research opportunities more quickly and effectively. contact details above or by

phoning 0131 335 4050.

Page 4 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070

GENERAL NEWS

MS Society Professional Study Grant CHRISTMAS IS COMING… Programme This year’s MS Society Christmas The study grant programme is available to all health and social catalogue is now care staff who work with people affected by MS. The aim of the available with a programme is to enable health and social care staff to attend fantastic selection of cards, gifts and courses or training events that will help them provide people stocking fillers. All proceeds go affected by MS with the highest possible standard of care and towards beating MS. support.  Catalogue order line - call 0844

314 4384 The Society can award up to £1,000 per application and will  Catalogue customer services - call usually contribute 50% of the total course fees; however this can 0844 314 4385 be exceeded in exceptional circumstances. Browse and shop online - visit

www.mssocietyshop.co.uk To apply for a grant, applicants must be members of the MS

Society’s professional network, which they can join free on the website at: http://www.mssociety.org.uk/ms-support/for- ONLINE CHATTER professionals/join-the-professional-network Currently being discussed on the Asians MS Facebook group: The grant application form can be found on the MS Society’s website at http://www.mssociety.org.uk/ms- -Getting your own MRI scan -Vitamin D resources/professional-grant-application-form -The Paralympic Games -Asian attitudes towards disability For more information about the Study Grant Programme and -Disease Modifying Drugs and other medication other professional development opportunities please contact the -Do you prefer cooler weather? education department on 020 8438 0888 or email https://www.facebook.com/group [email protected] s/2416402103/?ref=ts

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FIRST SERVE!

In keeping with the MS Society’s theme of “Keeping Then it was time to get down to the serious Active”, Asian MS Committee members Vicky Rose business of raising more funds via the silent auction and Vinnie Kochhar, decided to raise money for the and the raffle. Many local businesses had donated MS Society and Asian MS by holding a Tennis prizes. The Muscles from the Chandos coaching Tournament and Lunch at the Chandos Lawn Tennis team, had each donated a tennis lesson; these Club, their local tennis club in Hampstead. prizes proved to be very popular and helped us to raise £400 from the raffle alone. Having enlisted the professional help of another club member, Pam Henry, a Tennis Doubles Day was A special thanks to all the donors of the silent organised for a fine, crisp September morning. auction prizes, Gerry Defries, local artist for his Around 30 members and non-members gathered at painting; “Racing in Barbados”; Mona Chander for the Club House, bright and early. Most contenders the Jimmy Choo Clutch; Kara Dressel for Pilates donned the bright orange t-shirts of the MS Society Classes; and our own Rajiv Taneja for tickets to a and warmed Man Utd match at Old Trafford. These donations up with a raised over £1000. little pink bubbly; the Thames Valley Sports deserve a special mention competitors for their support and generosity in providing the took to the tennis balls for the tournament and having a stall at courts with the event, which was manned by Asian MS member great and Thames Valley Sports owner, Ramesh enthusiasm. Gangotra. The matches were hotly contested; the pride of Chandos Tennis Club was at stake and there was the The MS Society staff, Lee Dainty and Saher promise of extravagant prizes….. Two hours later, Usmani were a great reminder of why we were two winners emerged, our own Greg Rack and a there - to get loud about MS. Behind the scenes guest from Regents Park Tennis Club, Nancy. Laurence Tickell helped to make the whole event colour coordinated and MS themed. Food also featured high on the agenda, in the morning guests were offered mini Danish pastries, Chandos Lawn Tennis Club provided their lovely home-made almond shortbread and exotic fruit facilities to enable us to raise over £3000 all platters. Twenty other supporters and friends joined because of the big heartedness of the members in for lunch, which was a lavish affair and included and guests. Team Chandos were truly amazing, fatoush salad, avocado with wasabi mayo and aloo they know who they are. chaat as starters; teriyaki salmon, Maharashtran chicken and aubergine miso to follow; and finally, A brief appearance by club Chairman, David New York cheesecake, chocolate tart and mango Bernstein, also Chairman of the FA ensured that fool. Game, set and match to our Head Chef Madhvi the football fans at the club were also kept happy; a Chanrai who generously donated her time and great way to kick off the autumn and end the energy! It was all washed down with fine wine from Summer of Sport. an anonymous donor!! ~Vinnie Kochhar, Asian MS Chair

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A CHANCE TO GET INVOLVED THE MS REGISTER – Have you signed up yet? Experiences and perceptions of healthcare services from people with MS and their The MS Register is a clinicians ground-breaking study designed to increase our This study aims to gather the experiences of understanding of living with people with MS of health care services and MS in the UK. You can take part by completing a investigate what they feel has been helpful or series of simple online questionnaires. could be improved If you are over the age of 18 and living in the UK, What will participants be asked to do? with a confirmed diagnosis of MS made by a In this study you will be asked to talk to a consultant neurologist, you are eligible to take part researcher about your experiences of health care in this study. services for MS and your health care needs (for There are also a small number of pilot sites that are both physical and psychological/emotional collecting clinical information: Royal Victoria symptoms). This will last up to an hour. This can Hospital, Belfast; Western General Hospital, take place in your home or work, or at a University Edinburgh; St. Mary’s Hospital, London; Queen’s of Manchester building. We would like to make Medical Centre, Nottingham; and Morriston taking part as convenient as possible for you, Hospital, Swansea. however, please know that we cannot reimburse your travel expenses. http://www.ukmsregister.org

A small group of people will be invited to take part in a follow-up interview six months and twelve months after the original interview. You can take KEEP YOUR EYE OUT! part in the original interview without taking part in the additional interviews. The MS Society maintains a list of research studies If you are over 18 years old with a diagnosis of MS and are living in the Greater Manchester region, and clinical trials that are the study would be interested in hearing from you. currently recruiting It runs from September 2012 to September 2013. participants. If you are

If you would like to find out more about this study interested please go to: and would like to receive a participation http://www.mssociety.or information sheet, please contact Abigail Methley at [email protected] g.uk/ms-research/get- or on 07950-619368 involved-in-research

Page 7 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070

A CHANCE TO GET INVOLVED Help the MS Society set future MS research

‘My MS, My Needs’: Understanding the needs of priorities people with MS in the UK The MS Society is In early-November, the MS Society will launch one of leading a new its largest ever surveys, to help it to understand how project to put people affected by MS at the well the UK is meeting the health and social care centre of setting research priorities. Through needs of people with MS. this project the Society hopes to find the top 10 unanswered questions in MS research. A short questionnaire will be posted to all the

Society’s members who are over 18 and have MS, to ask if they are able to access the care and support People affected by MS, MS professionals and they need. neurologists will identify the questions and set the research priorities. This could include any The results will allow the Society to campaign for area of MS, from treatments for a particular change and work to develop services that better meet symptom to support for day-to-day life with MS. the needs of people with MS.

The results will be announced during MS Week 2013, This new priority setting partnership is and, as well as a national picture, we will analyse supported by the James Lind Alliance, an results locally to understand the ‘postcode lottery’ in independent, non-profit organisation. They services for people with MS. specialise in bringing patients, carers and health care professionals together to identify To analyse results locally, a large response is and prioritise unanswered questions. They will essential. Everyone’s response matters and will be guide this work to ensure an unbiased result.

used to support the Society’s work for years to come. The survey, which takes 10 -15 minutes to Participating is easy - the questionnaire takes 15-20 complete, is an opportunity to ask questions minutes to complete. important to you which could help steer future For more information contact the research team at MS research. Take part in the survey at [email protected] or on 020 8438 0822. www.mssociety.org.uk/JLA

Page 8 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070

A CHANCE TO GET INVOLVED MS Activity Weekend Living with unpredictability in MS Friday 24th - Monday 27th May 2013 This study aims to explore the question ‘what is it For people with MS, their families and like to live with an unpredictable illness?’ friends

What will participants be asked to do? Choose from a variety of activities or Participants who live in the Hull, Lincoln and relax in the tranquil setting of the Nottingham area will be offered the choice between beautiful Kielder Water & Forest Park. having a face-to-face interview, a telephone 3 Nights £317 interview or attending a focus group. Includes accommodation, activities and Participants who live outside of these areas will be all meals asked to take part in a telephone interview. Or book the Respite Care Package The interviews/groups will be conducted using a (over 18) 3 Nights £488 semi-structured format and will be recorded for later Includes care, accommodation, activities analysis. Interviews will last about one hour; focus and all meals groups will be held at a local venue and will last about one and a half hours. Please note that it may To book call 01434 250232 or not always be possible to run local focus groups due email enquiries@calvert- to numbers. kielder.com Each person will receive an introductory phone call to explain the study and answer any queries or www.calvert-trust.org.uk questions. Participants will then choose their preferred way of taking part (if possible); once consent has been given the participant can take part Tips For Staying Healthy Over Winter in one interview/group. ~Keep your Vitamin D levels topped up with If you have a diagnosis of MS and can speak supplements

English, you will be eligible to participate. The study ~Make sure your heating is working runs from October 2012 to February 2013. If you would like to find out more about this study ~Eat lots of fruit and vegetables and would like to receive a participation information ~Keep up with your exercise routine sheet, please contact Hannah Wilkinson at [email protected] ~Wash your hands to keep those bugs away

~Ensure you have sufficient medication at home

Page 9 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070

RELAPSE SUPPORT SCHEME Mentioned in the last newsletter, the MS Society is A trained volunteer from Asian MS will help running a scheme which Asian MS is supporting. This individuals to decide how best to meet their non- is a great opportunity for our members to become medical needs during a relapse, the plan will then be involved in this innovative pilot scheme. written up and the volunteer will be the participant’s point of contact for help. The Relapse Support Scheme was piloted in 2010 in East Sussex and the participants all agreed that this A small grant of £100 will be made available for the planning process was “worthwhile and made them feel person with MS to spend on providing support during more in control of their lives and the situation”. The a relapse. They can use the money for almost scheme is now being piloted with Asian MS to see anything they need, for example, contributing towards whether it will be successful with a wider group of the cost of petrol if a colleague gives them a lift to people. It is a scheme that assists individuals to plan work. ahead and avoid disruption to their day-to-day activities when they have a relapse. If you are interested or know anyone who has MS (this is open to all types of MS) and would like to get Symptoms when having a relapse can’t be predicted. involved, please do email Saher at the MS Society at However, individuals can plan what support they may [email protected] or call her on 020 8438 need should they have a relapse. The scheme will 0856. show individuals how to plan and where support is available.

Example of a Relapse Support Plan .

Name: Felicity Farmer (This is a lady that has small children, and works part-time. She has friends and family close by to support her)

What help do you think you How often Who is your 1st Who is the How much money to say will need? do you think choice who alternative ‘thank you’ / pay for support? you’ll need can provide person who can this support this support provide this per day / for you? support if your week? 1st choice isn’t available? Someone to drive the children Twice a day My friend My friend Tracey £10 towards petrol to school and home again Donna, as her children go to the same school Shopping for food Twice a week My friend Pam My friend Tracey £5 bunch of flowers to say thank as she can do you my shopping at the same time as hers Travelling to and from work if Twice per My colleague My dad £10 towards petrol I cannot drive day Philip lives near by and I can share a lift with him To save you looking for contact numbers when you need them, why not list them here so they can all be easily found.

Mum & Dad: 01273 555555 Donna: 01273 666666 Tracey: 01273 777777 Pam: 01273 888888 Peter: 01273 333333 Philip: 01273 444444 Jo: 01273 222222

Page 10 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070

CARE AND SUPPORT UPDATE

Supported short breaks – A new partnership with hotels in Blackpool or Lytham St Annes over any Carers Trust and local Crossroads Care schemes weekend in December.

People affected by MS who live in England and Wales Weekend stays are 3 nights from Friday night to can now access care and support during their short Monday morning. The price for two people is £179 breaks and holidays, thanks to a new partnership for dinner, bed and breakfast. between the MS Society and Carers Trust. Both hotels are accessible with ensuite wet floor Care will be provided by trained care support workers shower rooms, hoists and other specialist from local Crossroads Care schemes, which are equipment. Bond have a CQC-registered care network members of Carers Trust. They will come to agency which can be booked for the stay if wherever you are staying, to provide that support for personal care and support is needed during the you. Having someone else take over the caring break. responsibilities for a while means that families can go Contact Bond Holidays to discuss a booking on away together – or people with MS can travel 01253 341218 or email [email protected] independently – safe in the knowledge that the main Make sure you mention this offer when booking. family carer will get a chance to rest and recharge their batteries. If you have any comments about Bond Holidays or their accessible hotels, please call 020 8438 This is a pilot project, so at the moment supported 0805 or email [email protected] short breaks can be taken at destinations in most of Wales, on the south coast of England and in East Anglia. Find Me Good Care – a new website helping people make better choices about care and To find out more about the service and how it works, support or to order an information leaflet, call 020 8438 0805 or email [email protected]. Find Me Good Care, has been developed by the Social Care Institute of Excellence to help people take their first steps in seeking the right care. It includes information and guidance on how to Bond Holidays – 2 for 1 MS taster weekends in choose and pay for care, together with a directory December of providers and the opportunity to provide feedback. As a first step in a new partnership with Bond Holidays, we are pleased to announce that people The MS Society is a partner of Find Me Good with MS, their families and carers will be able to take Care, and will hopefully make it easier for people advantage of a 2 for 1 offer at their accessible affected by MS to make the choices that are right for them. More information: www.findmegoodcare.co.uk.

Page 11 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070

The Closest I Shall Ever Get To A Paralympic Medal -THE MS SOCIETY AWARDS, A Personal View by Vinnie My big chance to mingle with the stars came at the Another nominee was Richard Gau, in his 80s MS Society’s Annual Awards Ceremony, held at the and sole carer for his wife who is severely prestigious Royal Garden Hotel, Kensington on 25th disabled by MS and is also diabetic. It was a September. I was not sure how all the excitement of privilege to sit beside such smiling selfless last year could be beaten, Amrit Gajjar won the people. So, when Kate Silverton announced this award for Carer of the Year (having been nominated category I thought how could you possibly choose by Asian MS.) between any of these heroes (not to mention the third finalist Jan McDonald who was not on our I thought the 2012 event would be a quieter affair table!)? An impossible task, but in the end the and would be a chance to observe and network for winner was Rory. I remain touched by their stories Asian MS, as the spotlight would be elsewhere…… and struck by their good cheer and humility. This time, I was invited as I had been a Judge for the MS Employer of the Year category. I had thoroughly It was an inspiring afternoon and the icing on the enjoyed the judging process, as it had been a cake was my photo with a silver Paralympic chance to learn about some of the gold star medal and its true owner (!) Stephanie Millward. organisations that create an excellent working She was the environment for staff and awareness of the fluctuating condition of MS. Our shortlist included winner of the MS AXA Insurance, East Durham Homes and Lloyds Inspiration of the Banking Group but there were many other Year 2012. Being organisations who were also worthy of being diagnosed with nominated. MS at the age of 17 was no bar to The welcome drinks reception was the ideal time to her winning 5 medals at the Paralympics in raise the profile of Asian MS with new faces. So I found myself standing next to Janice Winehouse swimming! I needed to get my hands on that (mother of the legendary Amy) and rubbing piece of silver and here is the proof. shoulders with Oritse Williams of JLS pop group fame. Top MS researchers present included Prof. I felt honoured to be with all these amazing Alastair Compston and Prof. Robin Franklin. individuals and left the event on a high. I ran to the cloakroom for my coat only to be stood behind Volunteers were also honoured for fundraising or Prof. Giovannoni of Team G fame. I saw his name raising awareness and they enjoyed an afternoon tag and said “I know you! You’re Trishna’s hero they would never forget. I felt extremely blessed to Gavin!!” He laughed; yes he knew Trishna well be seated next to one of the youngest nominees, (our Newsletter Editor no less) and praised her for Rory Bailey. His mum had put him forward for the Carer of the Year Award. He has cared for his mum all her hard work. At least I did not have to explain from the age of 14yrs but has also managed to pass about Asian MS to him….! GCSEs and gain a place on a bricklaying course. How could he possibly do it all? ~Vinnie Kochhar (Asian MS Chair)

Page 12 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070

Rather than take resources from vital research and

DATES FOR support, celebrations will be integrated into existing YOUR events. MS Week, annual meetings, national fundraising events and the MS Awards will all have extra “60th DIARY sparkle”. If you have any ideas about how to make fundraising events that extra bit special then please email MS Research Day them to: [email protected] The 4th MS Research Day by Professor ********************************** Gavin Giovannoni and the Neuroimmunology Group at The Royal London Hospital will …..NEWS FLASH….. take place on Saturday 2nd February from 10am to 3pm. MS Society Chief Executive Simon Gillespie is This year, the talks will cover topics ranging leaving the MS Society to become Chief Executive of from symptom management and lumbar the British Heart Foundation (BHF). Asian MS would punctures to updating you on the group’s siblings study. There will also be speakers like to wish him well in his new role. from Queens Square as the group joins UCLPartners. ********************************** If you want to talk directly to a researcher, or you just need a break and refreshments, there’s a room for you to relax, have a hot ASIAN MS NEEDS drink and talk to the team informally. YOUR HELP! You can stay in one place and hear everything, or you can move between rooms As we expand, Asian MS is in desperate if you wish. It will take place at Church need of more volunteers to help us to House Conference Centre, Dean’s Yard , continue offering our support and services. Westminster, SW1P 3NZ. To book your Communication with our membership is of ticket please go to: utmost importance to us and we are http://msday.eventbrite.co.uk/ currently looking to appoint a Membership Secretary and a Website Editor. The Membership Secretary would be mainly MS Society’s 60th Anniversary! responsible for dealing with correspondence and membership issues In 2013, the MS Society turns 60 (such as maintaining the membership years old. It was founded by Mary database). The Website Editor would be in and Richard Cave to support and charge of updating the Asian MS website, empower people affected by MS. particularly uploading e-editions of the Newsletter and Asian MS news. Please The MS Society will be celebrating the contact [email protected] if achievements of everyone involved in the you are interested in either post and would organisation and looking forward to an like further information. Emails should be exciting future. addressed to Vinnie Kochhar.

Page 13 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070

SANJAY AND VINNIE AT THE PARALYMPIC OPENING CEREMONY Launch of WAMS

Firstly, it was an absolute privilege to have “Women Against MS,” or WAMS, is a received tickets via the first ballot. Following the group of MS Society volunteers who wonderful Olympic games, I was eagerly believe that WAMS will become a tailored anticipating the opening ceremony of the support group that fits the needs of all Paralympics following the warm up. women affected I went with Vinnie - well she doesn’t get out by much. It started with an unconventional trip to Multiple Westfield to buy (for guess who) some overpriced Sclerosis shoes. I suppose that was my good deed for the in the day; I never realised I had such serenity! numerous We moved on to the fabulous stadium to absorb guises that women are expected to be - the atmosphere. It mother, wife, lover ... an endless list. was kind of surreal The group is having its launch on 26th being there and we January 2013 at the Charles Clore Centre had to keep at Hampton Court Palace, East Molesey, pinching ourselves Surrey, KT8 9AU. It will run from that we were. Even 12.30pm-3.30pm and the programme will before the include: ceremony started, the music was great and as Police fans, it was  Welcome: Hilary Sears – Chairman delightful to hear ‘’So Lonely’’ played in such a of the MS Society wonderful arena, however, Vinnie thought it was  Jo Johnson: Author of “Shrinking hilarious to sing the words “Sue Lawley.’’ The Monster” Different folks different strokes!  A glass of sparkling wine and afternoon tea Once the ceremony began, it was awe inspiring. It was full of colour, fun and intelligence. It is very Booking is currently closed due to difficult to capture in words, it was truly the event’s popularity. However, if you would like to be added to the magnificent. The Queen and the National Anthem waiting list, then please go to: were very uplifting and yes Vinnie did stand http://wamslaunch.eventbrite.co.uk/ leaning on my chair!! It was certainly an ?access=WAMS-VIP experience and magical moment that neither of or contact WAMS London us will ever forget. [email protected] ~Sanjay Chadha (Asian MS Co-Founder & Committee Member) Tel: 07848 105191

Page 14 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070

Funding opportunity for Protecting yourself people with MS against the flu

National charity the MS Research and Relief Fund It’s that time of year again when everyone seems offers grant funding for items including equipment, to be coughing and sneezing. The flu season is aids, adaptations, holidays and respite care. upon us and it is important for MS’ers to know The fund can be used either to complement grants whether or not they should be getting their jab. awarded by the MS Society where a shortfall in funding exists, or as a single funding opportunity. The current general advice is that people with MS The registered charity will consider applications for are eligible for a free flu jab on the NHS. These grants for individuals and for groups. are usually administered in your GP’s surgery. You

For more information contact the charity’s Grants should be able to speak to your MS Nurse, Manager, Dave Farham on 01670 505829 or Neurologist and/or GP about this. The flu jab is an [email protected] or visit inactive vaccine so is generally safe for MS’ers, www.msresearchandrelief.org; or contact Julie however, if you are on any kind of disease Gilson, MS Society Grants Manager at 020 8438 modifying drug or symptomatic relief drug then you 0950 or [email protected] need to speak to a medical professional first, to ensure that there will be no interactions.

Please go to the following links for more information:

https://www.wp.dh.gov.uk/immunisation/files/2 FEEDBACK NEEDED! 012/08/2900359-Seasonal-Flu-A5_v1_0A.pdf Asian MS would like to receive and your feedback about http://ms.about.com/od/treatments/a/flu_shot.h our newsletter. tm Please go to the following link to complete the survey: Don’t wait for a http://www.surveymonkey.com/s/88H flu outbreak to DQL6 get your shot!

Page 15 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070

Recipe from Lubna Lubna, an Asian MS member since 2005, has been kindly sharing her delicious recipes Chicken Curry with Asian MS.

Ingredients: She was diagnosed with MS following an MRI scan in 1991, with symptoms having 2lb/900g Chicken (on and off the bone) included optic neuritis and fatigue. While 2 large onions chopped she feels that she’s slowed down a great 1 tsp fresh ginger paste deal as she’s grown older, she is still able- 1 tsp fresh garlic paste bodied and considers herself to be very 1 tsp cumin (jeera) powder lucky. 1 tsp coriander (dhaniya) powder 1 tsp red chilli powder or to taste She joined Asian MS after she met Shiv Salt to taste (Asian MS Treasurer) at MS National Centre. 1 tsp garam masala 2 chopped tomatoes He was the first Asian person that she’d met 2 tblsp vegetable ghee or oil who also had MS. She has previously served Fresh coriander to taste on the Asian MS committee.

Method:

-Cut the chicken into medium sized pieces. Heat the ghee or oil in a large saucepan. Add the onion and MS In the Media fry until golden.

-Add the garlic and ginger paste and fry for a few Shift.ms has been involved moments. Add all the ground spices and fry for a in the making of some minute, making sure the mixture does not stick to the ground-breaking short films bottom of the pan; add a splash of water if required. about MS. They are Then add the chicken, mixing it well with the spices. available to view on the Shift.ms site and on the Shift.ms channel on -When the chicken has browned, add a cup of water You Tube. and salt to taste. Cover pan with lid and simmer over a low heat for 15 minutes. “GALLOP”: http://shift.ms/gallop/ “BELONG”: http://shift.ms/belong/ -After 15 minutes, add the chopped tomatoes and continue to cook until the chicken is tender.

-When the chicken is cooked add chopped fresh BLOGGING coriander. Rani, the Asian MS Publicity & Support Officer has her very own blog. Serve with either rice, chappatis or naan bread. Check her out at:

http://missranikaur.wordpress.com/

Page 16 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070

General Information Information New editions/modifications for MS Society The MS Society has a range of publications publications containing information and advice for carers and families:  Diet and Nutrition (MS Essentials 11, • Caring for someone with MS: a handbook for Fourth Edition August 2012) family and friends  Oral Health factsheet (September 2012, • MS in your life – a guide for young carers download only) • MS Carers: The man’s guide to caring for someone with Multiple Sclerosis For a list of all the MS Society’s key You can order these from the Information team publications showing the latest editions by calling 020 8438 0799 or from the online shop and revisions visit the website: on the MS Society website. www.mssociety.org.uk/ms- resources/key-publications or call 0300 Financial assistance 1000 801. There are two grant funds specifically for carers • Young Carers Fund To contact the MS Society Information • Carers Opportunities Fund. Team: Email [email protected] There is also support for carers through the or call 020 8438 0799 (weekdays 9am- Short Breaks and Activities Fund. Carers can 4pm) apply to this for funding towards short breaks and holidays. *********************************** Find out more from the Grants Team on 020 If you would like a copy of the MS 8438 0700 or [email protected] or visit Society’s latest MS booklet, which has the grants pages on the website. been translated into 12 languages If you live in Scotland, please call 0131 335 4050 including Bengali, Farsi, Gujarati, or email [email protected] Hindi, Punjabi & Urdu, please contact Saher Usmani on 0208 438 0856 or Emotional support [email protected] The MS Helpline is available to give free and confidential advice and support to anyone They are also available on USB stick for a small fee. affected by MS from 9am-9pm, Monday- Friday. *********************************** The helpline number is freephone 0808 800 Please let Asian MS know if you 8000. Please specify if you would like to speak would like to submit a nomination with someone from Asian MS and you will be for the MS Society Awards 2013, as directed to one of our support officers. we will be able to offer help and support when filling out the nomination forms!

Page 17 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070

LATEST RESEARCH & MS IN THE NEWS

Exclusive: MS drug 'rebranded' – at up to 20 times the Brain Research Could be ‘Life- price Changer’ for Multiple Sclerosis Patients http://www.independent.co.uk/life-style/health-and- families/health-news/exclusive-ms-drug-rebranded--at-up- http://americannewsreport.com/brai to-20-times-the-price-8209885.html n-research-could-be-life-changer- for-multiple-sclerosis-patients- Scots scientist in MS breakthrough 8816585 http://www.heraldscotland.com/news/home-news/scots- Scientists develop nanoparticle scientist-in-ms-breakthrough.19103935 method to help tackle major Irish drug maker Elan spins off research arm diseases www.telegraph.co.uk/finance/newsbysector/pharmaceutica http://www.independent.co.uk/news/ lsandchemicals/9472275/Irish-drug-maker-Elan-spins-off- science/scientists-develop- research-arm.html nanoparticle-method-to-help-tackle- major-diseases-8327197.html NHS is failing patients with neurological conditions, claims report Genzyme touts positive results for MS drug Lemtrada http://www.guardian.co.uk/society/2012/aug/01/nhs- neglect-neurological?INTCMP=SRCH http://www.bostonherald.com/busine ss/technology/general/view/2022110 A single pill could treat Alzheimer's, Parkinson's AND 1genzyme_touts_positive_results_fo Multiple Sclerosis r_ms_drug_lemtrada/ http://www.dailymail.co.uk/health/article-2178306/A-single- Research: Having MS and pill-treat-Alzheimers-Parkinsons-AND-multiple- Something Else sclerosis.html#ixzz2BGHZLg4f http://multiple-sclerosis- How Yoga Helps Multiple Sclerosis research.blogspot.co.uk/2012/11/res http://www.huffingtonpost.com/2012/11/03/yoga-multiple- earch-having-ms-and-something- sclerosis_n_2040444.html else.html?utm_source=feedburner& utm_medium=email&utm_campaign Study: Infertility treatments can trigger MS symptoms in =Feed:+blogspot/WvYVL+%28Multip women le+Sclerosis+Research%29 http://www.examiner.com/article/new-study-when-multiple- sclerosis-and-infertility-collide

Page 18 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070

FUNDRAISING FOR ASIAN MS

Where do the funds go? The Myelin Repair Project

Asian MS is funded purely by One research initiative that has recently donations, which are received a £1,000 donation from Asian MS is used for various the Cambridge Centre for Myelin Repair, purposes. They include which is being supported by the MS Society. grants for individuals to The first stage of the research programme help them attend MS- saw the identification of a drug that could related events, contributions to research potentially repair myelin, which is damaged in projects, and administration costs. people with MS. The project is now moving into a second stage where researchers will undertake pre-clinical research, with the aim of ultimately translating lab findings into a clinical trial.

Asian MS are proud to announce that they now have the facilities to allow people to make donations in an easier and quicker way.

Donations by credit card via the internet site justgiving.com: www.justgiving.com/AsianMS

How to make donations by text message :

Send a text message to 70070 Remember to include the subject of the text: as AMSS89 and send it with the amount you wish to donate up to a maximum of £10

If you wish to donate £10 your message would read AMSS89 £10 If you wish to donate £5 your message would read AMSS89 £5 and so on.

You may donate with any number from £1-5, and the money will go directly to the MS Society, which will transfer the cash generated to Asian MS.

You can also raise funds every time you shop through EasyFundraising:

http://www.easyfundraising.org.uk/causes/asianms

We thank you kindly in advance for your support

Page 19 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070

Useful Information

General and Membership Enquiries: [email protected]

Website: http://www.mssociety.org.uk/ms-support/support-groups/asian-ms

Facebook: http://www.facebook.com/AsiansWithMS

Twitter: http://twitter.com/AsianswithMS

Saher Usmani, MS Society Support Groups Officer (please contact for hard copies of this newsletter and MS information booklets in different languages): 0208 438 0856 or [email protected]

Asian MS is a national support group for Asians with Vinnie Kochhar – Chair MS, their carers, friends and family. We seek to increase Shiv - Treasurer awareness and dispel ignorance of MS in the Asian community, as well as put fun and dignity into the lives Trishna – Newsletter Editor of Asians with MS and their carers. We also raise money for people affected by MS within the Asian community. Mukesh - Fundraising Officer We produce online and printed information in various Rani - Publicity Officer/Support Officer languages and offer an interpreting service.

MS Society Website: http://www.mssociety.org.uk

MS Society Helpline: 0808 800 8000

Asian MS JustGiving: www.justgiving.com/AsianMS

MS Register: www.ukmsregister.org

MS Trust (charity that provides information about MS): http://www.mstrust.org.uk/

MS Therapy Centres: http://www.msntc.org.uk/

Shift.ms (an online community for younger MS’ers): http://www.shift.ms/index.php

MS Research Blog (run by Barts & The London Neuroimmunology Group): http://multiple-sclerosis-research.blogspot.com

Page 20 Multiple Sclerosis Society. Registered charity no 1139257/SC041990 Registered as a limited company in England and Wales (07451571) TO DONATE BY TEXT TO ASIAN MS: Send AMSS89 £10 to 70070